Multiple Sclerosis Awareness: A Talk With Lindsey

by Hannah Berner

The Home T is committed to raising money for multiple sclerosis (MS) research at the National Multiple Sclerosis Society, but we also want to help raise awareness about the disease and how it impacts people.

This interview is part of an ongoing series where we talk to members of The Home T community that are impacted by multiple sclerosis. Today, we’re going to hear from Lindsey.

When did you learn you had multiple sclerosis, and do you have relapsing remitting or progressive?

In life: I firmly believe that everything happens for a reason, and being diagnosed with MS – the events leading up to and following diagnosis – only reaffirm this belief. My personal story of diagnosis can be described as somewhat of a whirlwind.

The short story goes like this: In March 2013 I was a (generally) healthy 28-year-old looking forward to a European adventure that my husband and I had been planning for almost a year when I began feeling initial symptoms of my first true “attack:” occasional tingling in both of my legs – from my toes to my shins – which quickly progressed to constant tingling and numbness from my toes to my belly button coupled with an odd sensation that there was a band tightened around my waste.

Within two months my diagnosis of relapsing-remitting multiple sclerosis was confirmed. Ironically, it happened to be 5 days before we were to leave for Europe. And, it was also the very same week my husband and I decided we were going to start our family. Perfect timing, right?

Needless to say my husband and I have never been more shocked, and it took a very, very long time for both of us to process (in fact I still feel that we’re working on that even 2 years later). But as much as I hate to admit it I feel that the short timeline (and even the ironic timing) of my diagnosis was a blessing. I can’t imagine having to go through years of questions and unknowns before a diagnosis. And honestly, we wouldn’t be where are today – raising a healthy 17-month-old little boy with another baby due this coming November – had it not been for everything that has happened to us related to my diagnosis and the events surrounding it.

How has it impacted your life the most?

Aside from the initial shock of realizing I have a chronic disease, I think for me MS has most profoundly impacted my mindset. I am very type A: I like to be organized. I love order. Lists are my friend. Everything is planned out. All the time.

But understanding I have MS, it is a bit scary to try and wrap your head around the idea that you can’t control everything. That I don’t know how I will feel mentally, emotionally, physically in 5 years. Or next week even. The best I can do is take things day by day. That has been extremely difficult to try and wrap my head around but with time I find it more manageable. Some days are easier than others.

What has multiple sclerosis helped you learn about yourself?

For my husband and I, we didn’t want my diagnosis with MS to hinder our desire to have a family. And thankfully, we worked together to make sure we could do that and have been blessed with our son in February 2014 and are preparing to welcome our daughter in November 2015.

Because MS fatigue is my biggest obstacle, right now I am really trying to find the best life balance for myself: between being a mom, a wife, a friend, working full time, manage my house and living life. I am trying to train myself to let things go, to ask for help, to admit that I can’t do everything. I think more than anything I have seen myself be a stronger person than I ever thought I could possibly be, while still trying to understand how to accomplish my goals and dreams as MS weaves its way into my life.

What’s one thing those that don’t have multiple sclerosis should know about it?

This a great question. I suppose for me, I think it’s important for people to understand that even if a person seems and acts healthy, does not mean that is how they are feeling. MS is debilitating in so many ways: for some it’s physically, others cognitively, but it can also be extremely difficult emotionally. And not only that, but fatigue is one of the most common symptoms of all MS patients. For me, it’s also the hardest to describe to those around me to help them understand.

What’s your favorite flavor of ice cream?

I really had to think on this one! I suppose my favorite is cookies and cream, but honestly for me, the waffle cone is the best part – so you can probably interchange plenty of flavors as my fav as long as I have it in a waffle cone. Ha.

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In 2011, Beth Donaldson, mother of two and wife of a police SWAT officer, was busy with work and the day-to-day life of raising two children. But when she was diagnosed with MS at 40, she dedicated herself to making a difference. Now she and her husband Mike run Living MS and are launching a charity bike ride to benefit MS awareness and research.